Tuesday, 1 July 2014

Disability Facilities Grant – discriminated against yet again.


Many readers will have followed our struggles to find a wheelchair accessible home in Spalding Lincolnshire. So just to recap, we have tried to help ourselves by:-
  1.  Private rental but nothing out there ready to move into, and landlords will not give you a long enough tenancy to apply for the grants for alterations needed.
  2. We are currently on SHDC s waiting list, but again they do not have suitable properties on their books, and they are about to change the rules so that our local connections will not be local enough anymore. We currently have the maximum points for a medical grounds move.
  3.  We are on numerous housing charities waiting lists, but they do not have properties in Spalding where we want to live.
  4. We spoke with the organisations that report to help the disabled with specialist mortgages, but because I am of working age, likely to return to work, not disabled myself, they will not help us.
  5.  Have tried to educate and make local politicians aware that the system is not working for the poorest, most disabled in society.
  6. We found an organisation, MIVA Partnership that are trying to help us, but once they get this latest news I think they will run for the hills. They proposed buying a place for us to adapt and rent off them long term. Their biggest struggle is getting the necessary finance so that they can make the standard buy to let return ratio of 8%.

Two weeks ago we thought we had found an ideal property to alter for Hubby’s needs. Just so you know we are not looking at palaces it was at the £120k mark. Our contact told us to start the ball rolling for the Disability Facility Grant as the property would need some substantial alterations to make it suitable for partially tetraplegic (paralysis in all four limbs) Hubby, me and our care team. Our contact in the housing team at SHDC sent a referral for us to the Lincolnshire County Council OT’s based in Lincoln.
Today I had a very depressing conversation with one of the OT’s where it has become very apparent that we do not stand a snow ball in hells chance of getting any financial help, not because we do not qualify but because the procedures in place are so rigid that they discriminate against the most disabled and poorest in society.

Why do I say that ?

1.       I was told , the whole grant procedure can take 5-8 months to release the monies, meanwhile you would have to live in the property.

                        WE can not do that, I would be putting my Hubby in physical danger if I did that. He can not go 5-8 months without having a shower, not being able to gain access via ramps to the property, not being able to access several rooms due to door sizes, etc. Also he is not well enough to live on a building site. I also have to consider the Health and Safety of our care team and myself come to that. Working in confined badly designed spaces is an accident waiting to happen. I am in constant pain at the moment because my back is close to giving out on me, due to all the manual lifting I have to do, in our currently badly designed space.

2.       What private landlord is going wait 5-8 months before he gets his monthly rent ?


So it looks like to me , that unless you own your own home, and are therefore not the poorest in society, there is no help for you to ensure that you live in a safe, and accessible home.

In Summary.


Most people when we tell them what has happened to us, can not believe that in BRITAIN today we do not look after our most vulnerable, what does that say about the society we live in.

Please RT this, copy it, spread the word, people need to know the present system is not helping the most needy in society.

Wednesday, 9 April 2014

Personal Budgets for those under NHS Funded Continuing Health Care.

On the surface having control over your own health budget is an attractive idea, after all politicians, clinicians have been trying to sell us the idea for quite some time now, as a way of taking some control over who we have looking after our loved ones. I say, beware of Greeks bearing gifts, ask yourself what is in it for them? I know that is a very cynical view of the world, but I have been bitten in the arse too many times by the system over the span of my lifetime to be anything other. 

Argument 1: It has been proven to work really well in social care.

Counter Argument : Patients under  Continuing Health Care have a proven on going medical need, their needs are usually complex , their care workers have to have specialised medical based knowledge. Who is going to certify that training, competency, on-going refreshers etc. If the patient’s family take on this role because they have decided to directly hire someone, this will be a mine field for both the family and the care worker.  Who will pay for the training? Only sensible other option will be to hire staff via an agency, so taking away the benefits of direct hire and higher wage for the care-worker.
Possible Outcomes: poorly trained care workers carrying out complex medical procedures, increase risk of adverse incidents or at best status quo.

Argument 2: Quality of Care workers can be improved as you can pay more.

Counter Argument: Yes it is true you do get what you pay for. Care workers are under paid for they do. Under the direct budget system you will probably have two ways of employing your care workers. Firstly directly employ the staff you need, this is not as easy as it sounds and although there are a few agencies that can do the pay roll side for you, which will come out of your budget. You become an employer responsible for insuring recruitment, National Insurance, rosters, annual leave cover, employment contracts, risk assessments, care plans, discipline and training are taken care of. I have an MBA, have run my own business, so understand all this stuff, I don’t relish taking this on.
The second way will be to recruit through a care worker agency, they will do all employers stuff for you, but you will still be responsible for negotiating the supply contract and because you will be a small customer you will not get the same deals that big organisations like the NHS negotiate.
Possible Outcomes: If you do it yourself and get it wrong, you could end up in court or employment tribunal. The papers are full of such stories of things going wrong. If you use an agency you could end up with contract conditions that are worse than the current ones under the superior buying power of the NHS. Benefit is that you take out the middleman and have a direct relationship with the agency.

Argument 3: The Budget.

How many families under continuing health care think they have a sufficient budget presently? Not many I would think. It has been made clear to me on several occasions that if my Hubby requires more than he is currently getting, he will be forced into a nursing home. This leaves me covering weekends, and any unexpected extra hours needed. So now you will be expected to take that already under funded budget and manage it yourself. How will it work under the new system if the patients requirements change how quickly will you be able to get the budget reallocated? In an emergency, i.e. all your staff fall ill with flu, weather prevents staff from getting there, you will be responsible for using your budget to cover this.  If managing the budget becomes too much, what mechanisms will be in place to have the NHS take things over again.
Possible Outcomes: Life is messy and so will this be.


I have come to the conclusion that rather than improve what is not working well with the current system the NHS have jumped on personal budgets as a means of ridding themselves of a problem that they cannot be bothered to fix. 

Wednesday, 29 January 2014

Housing and Care a User’s Perspective.


I am writing this to give those working in Housing and Care one users perspective of what is wrong with the current system and why it does not work for us and from what is seen, heard, around us does not work well for others as well.


Back in 2009 my then 64 year old husband qualified for NHS Continuing Care, having been infected in his neck with Staphylococcus Aureus which caused crushing of his spinal cord, leaving him a partial tetraplegic with the added complication of having only one kidney as the right one was removed due to cancer. He has lots of medical complications caused by his spinal cord injury, is very severely physically disabled, cannot walk or stand and has limited arm/ hand function, needs help with all bodily functions, but is very much fully compos mentis.

We had recently returned from working abroad so to get local social services help had rented a totally unsuitable bungalow where Hubby had to be bathed in a paddling pool sat in his commode, stretching the shower hose over him. So when we were moved to the fairly new first floor flat in a development at an extra care facility, we were relieved to have at least a very small wet room.

Very soon after moving in we realised what a huge mistake we had made.

·         The master bedroom is not big enough to take a hospital plus a single bed for me at weekends when I am in charge of Hubby’s night care. Not big enough to allow care workers enough room to safely use a mobile hoist and be able to access the bed all around for using sliding sheets etc.  This has meant that I feel I have been forced to use a very dangerous to me manual lifting regime to get Hubby in and out of his wheelchair / bed. The room is carpeted which is causing difficulties in keeping it hygienically clean, water transfer from wet-room, accidents,  wheelchair tire tracks. The building construction means there is nothing solid to attach either a ceiling or wall track hoist.

·         There is a lack of storage space which means when I sleep in the spare room I have a usable bed which is surrounded and crowded out by stuff that we have nowhere to put. No secure storage for bicycles (my hobby), lack of built in wardrobes and not enough space to be safe in the flat and build some ourselves.
·         The wet room is so small that we have had some accidents when manoeuvring him in his shower chair, painfully catching my fingers, Hubby’s knuckles and toes.  

·         All of the doorways are so narrow that Hubby has to be extremely careful when lining up his chair to get in and out of the two rooms that he uses.

·         Our living room is too small to take a sofa, chairs and Hubby’s wheelchair plus the two side tables he needs so that things are within his reach.

·         All of access in, out and around our flat is very difficult to manage so Hubby is in effect imprisoned in two North facing dark rooms except for the occasional trip out for hospital visits.

·         Only access is via a lift that is so small that in an emergency it will not take an ambulance trolley. Also when we venture out I have to send the lift down and run down the stairs to meet it.
·         Our care workers when here sit at our small dining room table, with no proper storage place for their files and paperwork.

·         One luxury we have is a second bathroom which gives our care workers a separate hygiene area, and somewhere to store the hoist that they have to use. Not really a luxury as our home is their place of work, we don’t want to share a toilet with them. Accidents happen as well and they need some where to shower and change. It also means that I get to soak my over worked family carer aching bones in a hot bath now and then.

·         Our kitchen is totally inaccessible to Hubby.

·         A couple of years ago our housing association thought it a good idea to take away the wooden threshold strips leaving a 1 ½ inch gap under the door which then sucks into our flat the second hand cigarette smoke of our neighbour. Not an ideal living arrangement for a tetraplegic who is on the very limits of being able to breathe unaided. Also she is an added fire risk that with limited evacuations options is not acceptable to us.
Since writing this in January, our next door neighbour set her flat on fire, sadly losing her life. Despite what was reported in the local paper we did not have a safe exit option, we were trapped in our flat while they put the fire out. There was dense smoke blocking our only exit from the flat. It is even more urgent that we are moved to some where that is safe.

Needless to say we are both totally fed up with living somewhere that is totally unsuitable, is not enhancing what little life Hubby has left, and putting me as his carer at physical risk.

The Challenges

So what have we done to try and remedy the situation?  Three years ago we met with a council OT, who agreed that in principle we were housed in the wrong environment, were awarded the maximum points for a medically based move. Looking back on the interview, with the hindsight of doing more research, I now realise, from the way we were spoken to, that we were being condescended, that our concerns were not being listened to, but being replaced with pre-conceived notions of where disabled older people should live.
Since being on the housing list we have met with the obvious attitude that “you should be grateful for a roof over your head”. People in general do not recognise that disabled people should have the same choices as everyone else as to where and what kind of place they want to live in. This is obvious with the few places that we have been given the option of looking at. OAP bungalows with even less space, houses with tiny internal wheelchair lifts that Hubby cannot operate safely etc. It is becoming very obvious to me that no one has thought to build or adapt existing bungalows to meet the growing need for disabled wheelchair users that maintain their independence in the community by making use of care teams. Local Authority teams do not recognise the different space requirements of totally independent wheelchair users and those that need a care team.

The other day I looked at the floor plans for a new over 55 development in Bourne Lincolnshire. Not one of the floor plans had a bedroom big enough to accommodate 2 single beds plus wheelchair manoeuvre room or a separate hygiene area for care workers. Everyone seems to think the elderly and disabled want to live on a postage stamp.

So having increasingly despaired with the social housing market I turn my sights to private rentals. We would have to contribute more to our rent as the housing benefit allowances for private are not as generous, but as I fully intend to return to work as soon as possible this is not a big issue if we can get a landlord to work with us to make a bungalow accessible. We came across somewhere that we could have made perfect for our circumstances, it needs some alterations for has lots of potential. We got past the first hurdle of the rental agencies that usually suddenly make the property unavailable to disabled enquirers, got to speak to the landlord to explain our situation. He seemed very understanding of our plight, I explained that we would need to change the on suite bathroom into a wet-room out of our meagre savings, then once moved in apply for a disability grant for the other changes that we needed.  Also that longer term if my work situation panned out we would look to buy it off him. I also explained that we would need some sort of secured tenancy as to apply for the grant the council want to know you can live in the property for five years. Anyway we left the conversation at that point, as we had to involve the estate agent he was using to manage the rental. So I talked it through with the agent explaining the different type of rental agreement we would need, as she had no experience of other types other than the short-hold, 6 month, 12 month assured tenancies more usual in the private rental market. The estate agent and landlord subsequently had a conversation and unfortunately the landlord was not in a position to grant us a 5 years short hold or an assured tenancy so our perfect property fell through.

This means that in most cases the private rental sector is totally unavailable to mobility restricted renters, but the local authorities / social housing associations are not providing it either, does not sound very equitable or fair to me, or looking after our most vulnerable in society, does it you?

Still we have not given up, we found a company that sounded promising at first. They said they would find an investor to buy somewhere for us, for us to rent from them. This company so far has failed to find such an investor to help us.

Then I heard about a scheme for part ownership / part rent shared ownership scheme especially for disabled people on benefits. Guess what no help there because Hubby is over 65 and because I hope to return to work.

A Way Forward.

With the pooling together of Health and Social Care I am hoping that local authorities will feel more obligated to get housing right for those that have care teams. There needs to be recognition amongst all involved that health does suffer if housing is not right. Not just the disabled person as well, but family carers and the risks in the work place for paid care workers.

More people are having care provided at home, not just the short visit kind, but up to 24 hour coverage, which enables them to stay out of care / nursing homes. Suitable housing must be made available for this group.

Space for a wheelchair user is not a luxury it is a basic health and safety requirement.

Social Housing Providers need to do the following :-

1.       Make those needing specially adapted properties a priority as this group has very little choice to go elsewhere.
2.       Study in close detail, and case manage the disabled / older persons on their housing lists.
3.       You may not have the right housing stock. Think outside of the box where necessary to provide solutions either through new build or the adaptation of existing open market available properties.
4.       Listen carefully to the disabled as to what they need to get by, they are the experts on what it takes to get them through on a daily basis.
5.       Make sure properties are not in socially isolated areas, disabled want the same location choices as everyone else in society.
6.       Remember it will be a home but also in many cases a place of work for care workers.
7.       Stop putting wheelchair bound users on anything but the ground floor, it is not safe, even with lifts available , if cannot walk down/upstairs.  Increases evacuation time, can get stranded outside home if lift out of order. Puts unfair onus on care workers and fire department to evacuate person.

We will keep fighting on to get suitable housing for ourselves, not what someone else thinks is suitable but what we know will work well for us.